No big deal, she thought. Everything changed with a phone call just before the surgery from a doctor she'd never met. The news was bad -- cancer. "It terrified me," she said quietly of that 1980 phone call. She had a rare form of cancer called Adenoid Cystic Carcenoma (ACC), which normally starts in the saliva glands before slowly moving to other parts of the body.

For more than a decade she felt alone, like she was the only person on the planet afflicted with ACC. Finally, a month ago, she found fellow ACC patients and support on the Internet.

The 34 members have joined together to pool their knowledge of the disease and to help each other through the difficult times. Ms. Whitman had thought those times were over back in the early 80s when she underwent surgery and radiation treatment. She thought she'd beaten the disease. "It took care of it fine," she said of the treatments. Flash forward to 1992, when she was thrown from a horse and began having chest pains. Thinking she'd broken a rib, she went to a doctor for treatment. She was stunned to learn that the ACC had returned. Numerous small tumors riddled both lungs, tumors that were growing and pinching nerves, causing the pain.

"I thought I was going to die right away, because you think, `Wow, lung cancer,'" she said. "But it's not the kind of cancer you get from smoking." For sufferers of ACC, surgery isn't an option, because there are too many small tumors involved. A transplant is also out of the question, because doctors can't guarantee that the transplanted organs won't become infected by their new host body.

So she was left with painkillers and radiation treatments when the tumors get out of control. So she struggled on, alone. Of all the cancer cases in the world, about 6 percent involve tumors in the victims' head or neck. Of that number, only .06 percent are ACC. Back in 1980 they told her that ACC was a form of cancer that could be cured, that it wouldn't be fatal. "But it does kill you," she said, noting that one member of her support group passed away in December from the disease. "It may take its time to do it, but it kills you."

Ms. Whitman is her oncologist's only ACC patient. It's like that for most victims of the disease. And she's had to educate herself about ACC with the very meager resources that are available. Unlike most other diseases, there are no large medical tomes filled with page after page of symptoms, causes and remedies. Instead, all the information she's found is contained in two small folders, most of it is written in medical jargon that only a doctor could understand. "If you know what you're fighting, that's half the battle," she said. "But if you don't know how to fight it, you can't fight."

That frustration led her to put her request out on the Internet, hoping to find someone, anyone, who could help. "Until 1997, I thought I was the only person in the world who had it," she said. She went out and bought a television equipped to surf the web. "Am I the only one out here?" she asked the world.

No, as it turned out. One of the support group's founders saw her message and contacted her. Since then new members have been joining steadily. Most live in the United States. But there's a Canadian, two from Britain, one member in The Netherlands and one in Siberia. Over time, the bonds with these "strangers," who she's never met, have grown strong. "I'll bet I've probably become closer to a few of them in the group than I am to a lot of people," Ms. Whitman said.

Members share each new scrap of information they find. A web page has been set up, and as each piece of information is gathered it's been placed in an archive available through the web page for others who might want it. But mainly the group's members are there when times are tough, a caring "voice" from the ethereal space of the Internet saying, "Hey, it's okay. Buck up. I've been there before and made it through the hard times. You can, too." The web television has been a godsend for her. "Without it, I'd still be by myself. I'd be all alone. Or at least I'd think I was all alone," she said.

But even with the help of the support group, her prospects are not good. Because ACC is so rare, there is no research being conducted on how to fight it. No doctors are hard at work trying to find a cure. That's difficult to swallow, because she knows how horrible the disease is for its victims. But while some might be bitter with the lack of effort being put forth to find a cure, Ms. Whitman takes a more measured attitude.

"I don't like it, but I can see why (drug companies) do it the way they do it. It's good business. That's what it comes down to," she said. "Why should the drug companies spend millions of dollars to find a silver bullet for us when there's not that many that would be willing to buy it?"

So she waits, and she studies, and she tries to help others in the support group when they need a boost. "You just live until your quality of life stinks, then you have to do something about it," she said. When the painkillers no longer control the pain, she goes for more radiation therapy. It takes a lot out of her. And it takes a lot out of her husband, Kenneth, and the rest of her family.

"I think it's harder on them than it is on me," she said. "I've been dealing with it for so long it's just a way of life for me. "I have my bad days when I sit and cry, but it doesn't do any good," she said, softly. "I get more satisfaction from accomplishing things." And one of the things she and other members of the group would like to accomplish is to get some research started and to make the group the foremost experts on the disease.

"You've got to have a strong attitude with this," Ms. Whitman said with determination. "I can't wait for the rest of my life for this to kill me." Nancy Whitman suffers from Adenoid Cystic Carcenoma, a disease so rare that research isn't even being carried out to try and find a cure. "So much is not known about this thing," Ms. Whitman said. The rare cancer usually attacks victims' saliva glands, then lies dormant before coming back in another part of the body.

Ms. Whitman's has tried to educate herself about the disease, but little information is available. But the National Organization for Rare Diseases (NORD), a Connecticut based agency, may be able to help.

NORD has sent packets of information about the disease to Ms. Whitman and other victims, and may be able to help with getting funding to start research projects.

For a $35,000 fee, Ms. Whitman said, the organization will set up a fund to begin researching the disease. NORD will then start looking for grants and other sources of money to augment that intial down payment so that research can be continued.

Clarification of Evening News Article Content

"The (donated) sum of $35,000 must be reached before a grant will be considered." (NORD requires a minimum amount of restricted funds to accumulate before soliciting a research proposal on a specific disease [i.e., $35,000 for a one-year grant])

Members of a worldwide online support group she recently found have considered trying to raise the money themselves but haven't made definite plans. Group members set up a web site with an archive of all the information they've found on the disease. "We're so new we aren't even crawling yet. None of us has any experience with this sort of thing," Ms. Whitman said. "I guess we're just a bunch of people who don't know what we're doing, trying to do something."

Anyone wanting more information about ACC can contact Ms. Whitman at P.O. Box 121, Maybee, MI 48159-0121.

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